Raising and educating kids with dyslexia

Posts tagged ‘reading difficulties’

My son’s special education reading services have been discontinued. Since he was age seven in second grade (he is now thirteen and finishing eighth grade) he has been receiving specially designed reading instruction. This has taken the form of a number of different programs – Orton Gillingham, Wilson Reading System, Read Naturally, Project Read, and others. He has been taught such things as vowel teams, open syllables, closed syllables, and the floss and fizzle rule.

In the public school system, the reading instruction has been provided through an Individualized Education Plan (IEP). Before reading services could be removed from my son’s IEP, testing had to be completed to ensure that he demonstrated proficiency in basic reading skills and reading comprehension. Services should not and cannot be removed from an IEP without these proper procedures being followed. This is good news for the child.

So, what does this discontinuation of services look like for our family? For my son, it is like being released. When he enters high school in the Fall, he is free to choose and have more subjects in his schedule. For myself, I have to appraise these changes. Sometimes making sense of the test results is a challenge. The testing may give scores and labels such as low average or high average that enable weaknesses and strengths to be spotted, but ideally, being able to compare the recent testing with previous testing gives a better idea of improvements made, or not. It seems that this is how the Gray Oral Reading Test (GORT) should be used. Comparing the results of this test with results from the same test taken some years previously, my son’s weakness in reading accuracy and fluency was still evident. Dyslexia never goes away. Perhaps the testing for visual stress later this summer may help shed light on this weakness. On the Woodcock Reading Mastery test my son’s word decoding and comprehension on this test came out in the average to high average range. My understanding of dyslexia is that often reading, or decoding words, can take considerable effort for someone with dyslexia, leaving little opportunity to comprehend the passage just read. I have found that when the hard work of decoding is removed, for instance when I have read the same passage to my dyslexic daughter that she has struggled to read, her comprehension of the passage has greatly increased. However, this does not seem to be the case for my son. He performed very well in both reading and comprehension.

While my son’s weaknesses in reading still exist, when I put these together with the positive feedback I have received from his teachers about performance and progress in school this year, and with the removal of reading support allowing an expansion of subject choices for his final four years of school, I think the discontinuation of reading services is okay. In any case, services can always be reinstated, if needed.

We now have some cool images of my son’s brain thanks to his participation in the study on reading and reading difficulties by the Gabrieli Lab at MIT in Cambridge, Massachusetts. Part of the study involves an fMRI (functional magnetic resonance imaging) of the brain to understand brain basis of reading and language. I cannot say that I even begin to understand this. Even the few questions I did ask about the research made me realize the complexity of the subject and the knowledge of neuroscience of the technicians conducting the testing. Yet, it felt good to be participating in some research that will lead to a better understanding of dyslexia.

The MIT campus in Cambridge is always fascinating to visit. From our designated parking spot, we made our way to the McGovern Institute for Brain Research that took us alongside a railroad track. People sat in the building above us as we walked through an underpass noisy with the sound of air being sucked through large vents and the humming of air-conditioners.

Even on a Sunday afternoon it seemed that the MRI scanner was in constant use as one appointment ended and our appointment began.

For nearly two hours, my son laid head first in the scanner. The lower half of his body protruded out of the scanner. The only thing I could clearly see was the bottom of his sock-clad feet. As a mother, I was not impressed with the state of the bottom of his socks, but I was impressed by his cooperation and perseverance to remain still during the specific tasks he was given to complete and to enable good quality images of his brain to be obtained. At $30 an hour, he had some incentive.

We were informed that my son’s brain is one of the last five brains to be scanned in this study. The study, with 500 children and adults taking part, which began three years ago, is nearing its end. This is good news for us as we can expect to see a report from the study in six months time, rather than waiting over three years like those who participated earlier in the study. The only concern, my son pointed out, was that his twin brother would not be taking part in the fMRI part of the study and would therefore miss out on the remuneration.

The dyslexic student doesn’t fit into the education system. It’s like trying to climb into a box that is too small.

As I watched HBO’s Journey into Dyslexia last night, the documentary emphasized the struggle for the dyslexic person in the education system. The education system was described as having chosen a narrow band of learning in life into which the dyslexic student is expected to enter, and the main way through which he or she can achieve success, or failure. In the documentary, each dyslexic person interviewed had difficulty fitting into the education system. Most of them had emotional scars from this experience. It was heart breaking to hear their stories.

The documentary brought to mind my frustration, as a parent of two dyslexic children, with the education system. Often I struggle with knowing how best my children can survive their time within education and emerge from it as successful and unscarred. My underlying assumption, sadly, is that they are never going to be truly successful. I try to help make the system work for them, but success within it relies too heavily on being able to read and write.

I’ve found that most dyslexic students are offered slower-paced classes, because they don’t read and write with the same fluidity as other students. Slower-paced classes mean that less content is covered. Dyslexic students do not have a problem with understanding content. The problem is being able to access the content through reading and explain their understanding through writing. Slower-paced classes are not an answer to the problem. Slower-paced classes are an insult to their intelligence.

Dyslexic students are offered reduced curriculum. They are provided with textbooks that are easier to read, but that are also below grade level. Consequently, the content is less challenging. This also is an insult to their intelligence.

Dyslexic students are offered reading, and speech and language services in place of other classes. Often in middle and high school they have to miss out on particular subjects or electives in order to have these services. The classes from which they are excluded are likely to be subjects in which they could excel, given the right teaching. The lack of variety of subjects is an insult to their intelligence. Instead, they have to spend more time on reading and writing in which they are never going to be able to succeed.

All of this is frustrating and it is not an education.

So, what can the dyslexic student do to overcome this? They have to be encouraged to struggle through the current education system or they succeed by going around the education system, and excelling outside of the traditional academic environment.

Having said all this, some credit must be given. Understanding of dyslexia within the education system has improved. At one point, and this was apparent in the documentary but I also know this from experience, dyslexic students were not diagnosed, and instead were told to give up at school, to leave, or seated at the back of the class. There was little hope for them within the education system. Today, the understanding is better. Dyslexia is diagnosed within the education system and help is given with reading and writing. However, there is still an awful long way to go in changing the education system to allow people with dyslexia to be successful. My feeling is that those with dyslexia are the ones who are able to identify areas of change needed within the education system because they are the ones who can think outside it.

Figuring out the symptoms of dyslexia in your child can be a challenge. I’d say it’s never clear-cut.

I read a mom’s desperate plea for help across the Internet through www.netmums.com –something’s not quite right, could it be dyslexia or could it be something else? I knew exactly how she felt, having been there myself. Actually, to be honest I wasn’t even at that place. I was just asking myself: “What on earth is going on?”

We see these little things that don’t seem quite right – when she reads “for” as “of” for the millionth time, but then correctly reads the word “fortunate.” When she writes “brithday” instead of “birthday” even though the two words “Happy Birthday” are printed in the card immediately above where she is writing. When he can’t seem to remember that 3×4=12 even though he has recited the 3 times table for weeks on end. When he does subtraction instead of addition even though the “+” symbol is right there next to the math problem. When you feel such a hopeless mother because he still can’t tie his shoelaces. When the teacher at school looks at you coldly and says you are not reading enough with your child at home. Perhaps all of these or some of these things sound familiar.

What makes it even more difficult to figure out is if your child’s teachers do not raise any red flags. After being told at school that my child did not read enough, I made the effort to do more reading with her at home, I got a teacher to tutor her and work with her on reading, and she had extra reading help at school during vacations. No one mentioned the word “dyslexia.”

After struggling through first grade, second grade and into third grade, at 8 years old my daughter’s poor reading was the subject of discussion again. This time I asked the teacher one simple question: “Why can’t she read?” I enquired. “I have no idea,” the teacher replied. That was the turning point. I decided to find out myself. Thus began the journey of discovery into the world of dyslexia. The diagnosis was the sweetest relief I have ever known.

We’re participating in research on reading and reading difficulties performed by the Gabrieli Lab at MIT in Cambridge, MA. Well, the kids are participating. The Gabrieli Lab’s studies are designed to investigate the behavioral and neural basis of reading and reading impairments. My understanding of what that means is vague. They hope the results of their studies will help them to better understand dyslexia and benefit people with dyslexia in the future. I can understand this purpose. I really do hope the studies will benefit people with dyslexia in the future – perhaps my grandchildren or great grandchildren.

For the kids, the incentive for participating in the studies: payment – although this comes in the form of Borders or Barnes and Noble gift cards! The drawback: books or bookstores do not motivate my dyslexic kids! The solution: parents give cash in exchange for gift cards. The result: happy kids! Books purchased so far: Frommer’s Hong Kong – an up-to-date guide published in 2001. It looks good. Books to be purchased very soon: Frommer’s China or other guides. Guess where we’re headed this summer for an educational summer vacation!

As the Gabrieli Lab’s studies are looking at people with and without reading and language difficulties, all three of our children are involved. We provided information for eligibility. The studies involve two trips to the Gabrieli Lab at MIT. The first trip requires giving developmental history details, between 2-4 hours of diagnostic testing and providing spit in a cup for DNA collection. The second trip entails MRI and/or EEG brain imaging – fMRI that captures images of the brain painlessly & non-invasively using magnetic fields – that also take two hours. A stop at Chipolte, added to either trip, on the way home is preferable!

“Thriving with Dyslexia” caught my eye as I browsed through The Carroll School brochure. That little phrase speaks of my desire for my children! Doesn’t it speak for all of us who care about someone with dyslexia, or any other difficulty for that matter? It says: unleash the potential, enable a child to achieve their best and let them flourish in learning.

My browsing and our tour today of The Carroll Lower School for grades 1 through 5 with my husband and our daughter were not for her potential admission to the school but returning as an alum.

We had come to look at the brand new Lower School campus that opened in September 2010. The familiar Carroll logo on the sign in front of the school clearly beckoned us. We passed a new play structure and tall stone sculpture beside the path as we came to the main doors. Artwork adorned the walls in the main entrance and words such as “self-confidence, healthy in self-concept, happy and reflective” were scribed around the top of the walls near the ceiling. Stretching to our right and left were long corridors in mute colors broken by archways painted in mellow blue, green or orange. We passed through the archways as we peeked in on classrooms, spied teacher and students clustered around an interactive smart board and entered larger common areas, some filled with computers, others with mats for yoga and one area, where we finished our tour, dotted with tables and chairs and shelves filled with books.

Five years previous the sight of shelves of books in a school made me nervous – would this school understand that rows of books just emphasized the content locked on pages, unable to be accessed because of a struggle with reading. But today, it was okay! We had experienced the Carroll methods that provided access to curriculum and taught techniques to read words. Our daughter’s Facebook status after our visit: “happy memories.”

We sat and talked with some faculty. We discussed where our two Carroll graduates were now in their education. My daughter was listened to as she spoke about the support she currently needed but also her desire to learn and be challenged, just like a regular kid, in in history and science and other subjects. We talked too about brains – research in neuroscience, advances being made in cognitive development and its impact for those with dyslexia. But these matters will have to wait for future posts!

In the YouTube video (part 4) in my post “Don’t Call me Stupid” the UK actress Kara Tointon went to visit an optometrist, Mr. Burnett-Hodd, in London. He prescribed spectacles with colored lenses for Kara that eliminated what looked like clouds moving across the printed page that affected her reading. Like a big kid, I was jumping up and down and telling my kids that this was my optometrist when I lived in London and that I had sat in the very same chair as Kara having my eyes tested. That didn’t seem to impress them too much but what impressed me was that Mr. Burnett-Hodd’s path and my path would cross again with our interest in dyslexia. Of course, with me being located on the East Coast of the United States for a number of years there has been little chance for us to discover that dyslexia was of mutual interest. But I have discovered that Mr. Burnett-Hodd is a specialist in prescribing the use of color tinted spectacle lenses or contact lenses for people with visual stress.

Now, I was intrigued. Did either of my children experience this visual stress? The inkling I did have that the printed page was seen as distorted by people with dyslexia, I considered myth. In all the years I have talked to people about dyslexia, this has not been mentioned.

I couldn’t wait for the documentary to end, to question my children about this. To my surprise, I discovered that my dyslexic son, George, had used colored overlays for reading at school only last year. He said that the color overlay helped his reading because it stopped him seeing cracks on the page. His specialist reading teacher had given him the overlay but he’d only used it for a couple of weeks. She had left on maternity leave and he hadn’t used the overlay since. She has not returned to the school. Stephanie, I think that was her name, come back! If you read this blog Stephanie, get in touch!

So now this is something I will investigate myself. Cracks on the page seem like a symptom of visual stress. Skipping words, which George does when reading, can be a sign of visual stress.

I’ve been on the phone to Mr. Burnett-Hodd. I want to see him myself. But now he will be seeing George too. We will be traveling to London July 2011, more about this in a later blog post, so I have booked a “dyslexia” appointment with Mr. Burnett-Hodd for George. Whatever we find out will, of course, be written about here.

I’ve been doing a little bit of research too. Mr. Burnett-Hodd will be using a machine called the Intuitive Colorimeter – sounds like something out of a sci-fi movie – that helps select the right color lenses that improve reading. Maybe my son will end up with yellow or blue or pink-tinted spectacles! It seems that a guy named Arnold Wilkins is behind this idea of color overlays as the solution for visual stress. He’s in the UK and not surprisingly, after a little surfing the web, lots of UK results popped up about dyslexia, visual stress and colored lenses. So, off to London we go. Anyway, whatever transpires from this investigation, we’ll get to see the changing of the guard at Buckingham Palace!